Insulin dependent to non-insulin dependent?

[rak1978]

It is a hope/dream/wish of mine that someday I will magically become super healthy and become non-insulin dependent. In my warped mind, I think that if I loose weight, eat zero carbs, exercise daily, etc...that I will not need to take insulin.
Have any of you gone off of insulin and still managed blood sugars? Am I in denial by thinking this is possible? I currently take about 35 units a day (pumper) on a lowish carb diet.

I welcome any advice you may have (I can take it...I think). Thanks!

[foxl]

It is a hope/dream/wish of mine that someday I will magically become super healthy and become non-insulin dependent. In my warped mind, I think that if I loose weight, eat zero carbs, exercise daily, etc...that I will not need to take insulin.
Have any of you gone off of insulin and still managed blood sugars? Am I in denial by thinking this is possible? I currently take about 35 units a day (pumper) on a lowish carb diet.

I welcome any advice you may have (I can take it...I think). Thanks!

That is a low dose. I think you could ... especially if you do have a component of insulin resistance. Probably not permanently off, but a few weeks' to months' holiday?

[sarahspins]

Hmm.. well I DON'T think that 35u a day is all that low.. I am 100% insulin dependant and that's about what I use.

Have you recently had a c-peptide test done? That will really be the indicator of how much residual insulin production you have.. if your c-peptide is very low it's unlikely that you can go off insulin entirely.

[fgummett]

Good question Rachel...

As a Type 2, early last year (2008) I was using around 120u Total Daily Dose (TDD) via an insulin pump --- mixture of basal + bolus -- to manage fairly decent BGs

May 2008 I started CPAP for sleep apnea which cut be back to around 100u TDD -- basal + bolus

August 2008 I switched to a very low-carb diet which cut me back to around 50u TDD basal + bolus

October 2008 (having lost 25lbs with the diet) I underwent a Vertical Sleeve Gastrectomy which together with my diet has resulted in an overall weight-loss of 80+ lbs and rapidly decreased need for exogenous insulin.

Currently I use 8.25u TDD -- all basal and nearly all around DP.

I have not had to bolus for a meal since November 2008... with postaprandial spikes less than 8mmol/l and back below 7mmol/ within 2 hours of eating.

I could probably gain even tighter BG control if I did use more insulin but I want to balance that against continued fat burning and excess fat mass loss. That said, my last A1C was 5.5%

On occasions when I try leaving the pump off for a couple of days my Fasting BG is over 7mmol/l -- diabetic range still.

I was very hopeful that one day I will be off insulin altogether but the Fasting BGs have me thinking that I have long term damage that may not resolve... only time will tell.

[rak1978]

Hmm.. well I DON'T think that 35u a day is all that low.. I am 100% insulin dependant and that's about what I use.

Have you recently had a c-peptide test done? That will really be the indicator of how much residual insulin production you have.. if your c-peptide is very low it's unlikely that you can go off insulin entirely.

Funny you should ask...I just had my blood work done this morning (including a c-peptide, islet antibodies, and gad65). Will know results in a couple of weeks. I already tested positive on the gad65 last year, this is just a follow up.
We'll see :).

[rak1978]

That is a low dose. I think you could ... especially if you do have a component of insulin resistance. Probably not permanently off, but a few weeks' to months' holiday?

Ahhhhh...an insulin holiday/break would be nice.
I need to get off of it to loose the weight so that I can get off of it. Vicious cycle. I do believe I am insulin resistant, but I also have diminished insulin production, so I may be dreaming.

[rak1978]

Good question Rachel...

As a Type 2, early last year (2008) I was using around 120u Total Daily Dose (TDD) via an insulin pump --- mixture of basal + bolus -- to manage fairly decent BGs

May 2008 I started CPAP for sleep apnea which cut be back to around 100u TDD -- basal + bolus

August 2008 I switched to a very low-carb diet which cut me back to around 50u TDD basal + bolus

October 2008 (having lost 25lbs with the diet) I underwent a Vertical Sleeve Gastrectomy which together with my diet has resulted in an overall weight-loss of 80+ lbs and rapidly decreased need for exogenous insulin.

Currently I use 8.25u TDD -- all basal and nearly all around DP.

I have not had to bolus for a meal since November 2008... with postaprandial spikes less than 8mmol/l and back below 7mmol/ within 2 hours of eating.

I could probably gain even tighter BG control if I did use more insulin but I want to balance that against continued fat burning and excess fat mass loss. That said, my last A1C was 5.5%

On occasions when I try leaving the pump off for a couple of days my Fasting BG is over 7mmol/l -- diabetic range still.

I was very hopeful that one day I will be off insulin altogether but the Fasting BGs have me thinking that I have long term damage that may not resolve... only time will tell.

WOW! Congratulations on your success! That is really amazing.

[fgummett]

WOW! Congratulations on your success! That is really amazing.Thanks Rachel... I did realise it may not all apply in your case with your probable auto-immune involvement but at the very least I have found I can minimise my need for insulin by altering what I eat.

I should add that my activity levels have also increased -- nothing formal like the gym -- but I walk a lot more and take the stairs etc... I'm sure that also has a positive effect on my BG management and general well-being.

[foxl]

Rachel, Do you know which antibodies you have? The number of types has prognostic values.

In addition to GAD, the most common, there are:

ICA, IA2 and Zn8 (which is a recent discovery).

The more types you have, the more quickly you are apt to progress.

[rak1978]

Rachel, Do you know which antibodies you have? The number of types has prognostic values.

In addition to GAD, the most common, there are:

ICA, IA2 and Zn8 (which is a recent discovery).

The more types you have, the more quickly you are apt to progress.

I know that I have the GAD. Not sure on the other ones. I had some blood work done today to test for "islet antibodies". Are those the ICA and IA2?...sorry, I should know by now.

[foxl]

I know that I have the GAD. Not sure on the other ones. I had some blood work done today to test for "islet antibodies". Are those the ICA and IA2?...sorry, I should know by now.


ICA are islet cells, IA2 are insulinoma antibodies (actually to insulin, not a tumor, I bet you were teted for them though) and a zinc-containing enzyme?

Good you are getting them -- they are supposed to help you know what will happen and your doc sounds on top of em!

[Subby]

It is a hope/dream/wish of mine that someday I will magically become super healthy and become non-insulin dependent. In my warped mind, I think that if I loose weight, eat zero carbs, exercise daily, etc...that I will not need to take insulin.


If you are truly type 1 / 1.5 / with a deficit of insulin, non of those things will compensate for the lack of insulin in your body. The connection you seem to make between taking insulin and not being super healthy/being sick, is an unfortunate one - and does seem a little like denial to me, yes. Any ideas why you feel this way, was there particular things said by someone or particular thoughts you have had?

[rak1978]

If you are truly type 1 / 1.5 / with a deficit of insulin, non of those things will compensate for the lack of insulin in your body. The connection you seem to make between taking insulin and not being super healthy/being sick, is an unfortunate one - and does seem a little like denial to me, yes. Any ideas why you feel this way, was there particular things said by someone or particular thoughts you have had?

Subby, I totally appreciate your honesty. I think my feelings stem from the fact that when I was eating much better, I didn't need much if any injected insulin. (worth noting that this was at the beginning of my diagnosis...probably in the honeymoon phase). Maybe it's guilt. Over the past year or two, I have developed poor eating habits, and need much more insulin. Hence, the accociation of MY insulin use with guilt. I don't in any way look down on others for their insulin use or think associate their need for insulin with being sick. Actually, it's just the opposite. It's a necessary step to prevent them from being sick. It's a personal thing. I was on almost no insulin before I got the pump (2 yrs ago), and was 40 lbs lighter. Once I got the pump, eating habits declined, gained 40 lbs., and am on 35+ units a day. Do you see where I am coming from?
I know that the only way to get out of this way of thinking is to get myself back to where I was regarding eating habits and weight to assess how much of this is insulin resistance and how much is diminished insulin capacity. I'm working on it.

[lorilei]

I 100 percent agree with Subby...1.5 is autoimmune..are you aure you are 1.5...? We are bound to insulin until we are ALL cured...you can eat less carbs and therefore use less rapid insulin...but as a 1.5 you will still need insulin...sorry that you are under the illusion that you can get off of it??

[rak1978]

I 100 percent agree with Subby...1.5 is autoimmune..are you aure you are 1.5...? We are bound to insulin until we are ALL cured...you can eat less carbs and therefore use less rapid insulin...but as a 1.5 you will still need insulin...sorry that you are under the illusion that you can get off of it??

Hi Lori!
I agree with Subby too....I am in denial, but for the reasons stated in my post. Did you read my post just below his?
I think the only way to rid myself of this "illusion" is to get back to my pre-pregnancy weight and change my eating habits. Once I am there, then I can have a true assessment of where I'm at with diabetes.
Thanks for your comments. They are very much appreciated. :)

Rachel

[rak1978]

Lori,
One more thing...yes...tests show that I am either 1.5 or 1.

[Subby]

Subby, I totally appreciate your honesty. I think my feelings stem from the fact that when I was eating much better, I didn't need much if any injected insulin. (worth noting that this was at the beginning of my diagnosis...probably in the honeymoon phase). Maybe it's guilt. Over the past year or two, I have developed poor eating habits, and need much more insulin. Hence, the accociation of MY insulin use with guilt. I don't in any way look down on others for their insulin use or think associate their need for insulin with being sick. Actually, it's just the opposite. It's a necessary step to prevent them from being sick. It's a personal thing. I was on almost no insulin before I got the pump (2 yrs ago), and was 40 lbs lighter. Once I got the pump, eating habits declined, gained 40 lbs., and am on 35+ units a day. Do you see where I am coming from?
I know that the only way to get out of this way of thinking is to get myself back to where I was regarding eating habits and weight to assess how much of this is insulin resistance and how much is diminished insulin capacity. I'm working on it.

Ok Rachel. I'll just reply as I feel fit, I think you set of some buttons of my own and I can't guarantee they are relevant to you, sorry.

I can understand where you are coming from. With the comments about other people and insulin use, while I know you are trying to be considerate in dividing off other people from these feelings - it's still stands, that if you need insulin, you need insulin, it's a hormone replacement, and you shouldn't completely bedevil it in yourself if you can help it. As you say, perhaps a certain amount. But chances are, your condition is progressing, (you c-pep should help decide that) and you simply shouldn't resent a certain amount, it might be a lot of your current insulin usage.

Any other reasons why your eating slipped? I understand that the pump might make that temptation more alluring - but I don't think it's an automatic pump thing. I mean, I guess that can happen to some people, but for me the extra features of the pump really just led me to tighten up my eating, myself. Because I could get so much better results, I became more, not less motivated to try and keep my diet reigned in to something worthwhile. You didn't find this? Did you just start snacking more, what were the particulars of your diet slipping?

While you can identify the link to the pump, I just wonder if there were other things going on in your life as well, and if they should be thought about? Perhaps, if your low carbing was based on denial before (I CAN'T eat carbs because I will get high BGs and be sick and accelerate complications), you need to find something new to base it on, if that is the direction you wish to head.

The denial issue kind of reminds me of when I quit smoking. I have known so many people who try and quit using denial ("I won't let myself have another cigarette, even though I really want one, they really relax me, man I miss them 5 years on" etc...) and I knew I couldn't go that way. So I based my quitting on getting informed - about whether cigs really did all those great things (most of the time - no, the appealing terms like "relaxing me" were just another way to say "suffocating and poisoning my brain" - really) - and then making a conscious decision whether I wanted to smoke, each and every time. No denial, I carried a pack around with me for the first month. Because it is an illusion to think that cigarettes are not always with us or 5 minutes away. It is not always the easiest, but it is the best way to face your fears. Face to face. (And if you invest and believe in your own strength, it's not really all that hard, in fact in a way you cannot lose).

I just wonder if you were previously low carbing using a form of denial about carbs... then got handed the pack of cigarettes, so to speak... and couldn't help yourself. And you've never really gotten past this loss of the barrier to eating more. Well, I can say there is a better way. Get really conscious and straight up about it, make a choice "yes" or "no" every time, give yourself the option, don't feel powerless about it. If you choose to eat carbs, eat carbs. If you choose not to, then be sure to have lots of easy low carb alternatives around.

I say all that recognising that you've said you found low carbing a good way to lose weight. I do not know if it is guaranteed to work again. I say that to empower you, not put low carbing down - because there is nothing worse than being slave to an idea you feel is absolute, yet seems elusive or unattainable. I guess my sense from you is you would like to try ketogenic levels again, and see if you get the weight loss again, correct? Well, go forth and do it! The pump and your insulin are well and truly up for the ride, they are not stopping you...

[sarahspins]

I know that the only way to get out of this way of thinking is to get myself back to where I was regarding eating habits and weight to assess how much of this is insulin resistance and how much is diminished insulin capacity. I'm working on it.

A couple of things here...

1) Stop the guilt! It's not your fault.. it's a process. Unfortunately T1.5's end up in the same place as T1's do... you just take longer to get there. We all need insulin.. can't really go without it.

2) Weight.. yes, this is directly tied to food. You can certainly make smarter choices and use less insulin, and that may also be related to weight loss.. to a large extent, it's willpower... sometimes the pump makes it too easy to indulge a bit too much That said, I actually LOST weight when I started pumping, but for me it was the difference of going from "feeding" the insulin to taking exactly what I needed. Once I was no longer stuck in that cycle I dropped 20lbs over the next year. I've gained about 30lbs in the 3 years I've been on MDI.. I'm hoping to drop it when I start pumping again.

3) Get your thyroid function checked :)

[rak1978]

Wow. I feel like I've gotten free therapy. You guys are great, thanks! Here's another lengthy one...

Subby,
I left out a very important part of the equation. I went on the pump 1 month before getting pregnant with my last child, who is 10 months old. Prior to this, I completely avoided "cupboard" carbs in an effort to put off or minimize insulin use as long as possible. When my numbers were no longer in range with this tactic, I went for the pump. Once on the pump, I did start eating more snacks and more carbs (keep in mind, I was pregnant). So, that's how I aquired these extra 40 lbs. Now, the question is...why are they still with me? The answer is that I have tried to get away with eating things I shouldn't (I love to bake) and taking lots of insulin to cover it. Then there is the factor of stress. I have 3 little ones under the age of 5. The baby, until this week, has woken up many times per night and I am/was sleep deprived. Yes, I am definitely an emotional eater. When stressed, I eat. Unfortunately, pressing that little button has made it so much easier to eat things I shouldn't.
Then there is the factor of procrastination. There's always tomorrow. :)
The truth is, I believe I am on the right path now, eating wise.
For the record, I actually don't do completely no carbs. I think it's a great way of relieving some stress on one's pancreas and probably would help with weight loss, but I simply don't have the self discipline. My diet right now includes protein (chicken, fish, steak, etc..), cheese, nuts, veggies (including starchy ones such as corn), and some fruit.
I have learned a lot here. Mainly that everyone can tolerate different things and I have to learn what it is that I can and can not tolerate and eat accordingly. The Bernstein diet sounds great in theory, but not very realistic long term for me. My weight loss plan is not necessarily ZERO carbs, it "lowish". I find that the less insulin I take and the less carbs I consume, it's easier to loose weight.
I like your cigarette analogy, and it completely applies.
Thanks so much for the encouragement and gentle nudging. I need it.


Sarahspins,
Thanks for the great advice. It's encouraging to know that you can loose weight while on the pump. It seems that it's all a matter of self-control.
Also, I do take levothyroxine for hypothyroidism.



I think once I get my c-peptide and antibody results, I will feel more comfortable in whatever path I choose to conquer these things.
Thanks again for the therapy! Obviously, I need it.

[warrenav]

If you are truly type 1 / 1.5 / with a deficit of insulin, non of those things will compensate for the lack of insulin in your body. The connection you seem to make between taking insulin and not being super healthy/being sick, is an unfortunate one - and does seem a little like denial to me, yes. Any ideas why you feel this way, was there particular things said by someone or particular thoughts you have had?

My endo firmly believes I am LADA (1.5), with positive GAD and (relatively) low Cpep, but I still believe that "deficit of insulin" is a relative, not absolute black/white issue. After 11 years, I used my recent re-DX as a call to action to see what I could do with lower carbs and better exercise. I'd been running in the low to middle 7's for A1c for the last several years, and my endo would have had me add insulin with those numbers and the new diagnosis. I still wanted to stay off insulin, so it motivated me to try. Just a couple weeks ago, the new results came back... A1c now =6.0. So at least for this Type 1.5, I met my target and still non insulin. I do also take 2,000mg metformin (and numbers climb if I stop)

By the way, the changes I made were...

breakfast: -(cereal), +(eggs, meat)
lunch: no change (soup & salad bar)
dinner: -(starches), +(larger helping of vegetables)
snacks: -(carbs), +(nuts, jerky, string cheese)

exercise: biking >30mins, at least 2+/week

I'm probably not your average 1/1.5/2 (if such a thing exists), but it seems to be possible for some.

Warren.

[Subby]

My endo firmly believes I am LADA (1.5), with positive GAD and (relatively) low Cpep, but I still believe that "deficit of insulin" is a relative, not absolute black/white issue. After 11 years, I used my recent re-DX as a call to action to see what I could do with lower carbs and better exercise. I'd been running in the low to middle 7's for A1c for the last several years, and my endo would have had me add insulin with those numbers and the new diagnosis. I still wanted to stay off insulin, so it motivated me to try. Just a couple weeks ago, the new results came back... A1c now =6.0. So at least for this Type 1.5, I met my target and still non insulin. I do also take 2,000mg metformin (and numbers climb if I stop)

By the way, the changes I made were...

breakfast: -(cereal), +(eggs, meat)
lunch: no change (soup & salad bar)
dinner: -(starches), +(larger helping of vegetables)
snacks: -(carbs), +(nuts, jerky, string cheese)

exercise: biking >30mins, at least 2+/week

I'm probably not your average 1/1.5/2 (if such a thing exists), but it seems to be possible for some.

Warren.

Warren, I was replying to Rachel's situation, that she is type 1.5 AND taking into account everything else she said such as I currently take about 35 units a day (pumper) on a lowish carb diet.

Please do not understand me as saying that a type 1.5 can't go for perhaps a long time without insulin needs. I'm not. Of course it is a matter of degrees, or relative, as you put it.

What's your c-pep, if you don't mind sharing? I have been trying to get a handle on what kind of figures seem to provide that "grey" area... I don't know if such a handle is to be found, but am just inquisitive. :)

[warrenav]

What's your c-pep, if you don't mind sharing? I have been trying to get a handle on what kind of figures seem to provide that "grey" area... I don't know if such a handle is to be found, but am just inquisitive. :)

I've had 2 c-pep's recently, a random and a fasting...
06/02/09 c-pep=0.6 (0.8-3.1), bg=89 (70-99) fasting
05/22/09 c-pep=2.2 (0.8-3.1), bg=144 (70-99) random

and for GAD's sake...
05/22/09 gad-65 ab=1.7 (<1.0)

Hope that helps.

[foxl]

Awww ... thanks Warren.

Your GAD is a LOT lower than mine, mine was > 30 ... my only c-pep was fasting and was higher than yours. So ... I may progress more quickly than you have ... or, not! It will be interesting to follow.

[Subby]

Thanks Warren. I wish I could say it means a lot to me, but not really, and as far as I know c-pep level is not going to correlate smoothly with dependency, between people. Still, interesting to ponder, eh?

[foxl]

I am guessing the greatest value in C-pep would be sequential measurments indicating change, within a single patient -- under VERY CONSISTENT testing conditions -- either fasting or similar timing and meal load prior to testing.

Although I do not see any information on uising it in such a manner, in the literature, so far ...

[Taffy]

Has anyone experience leg muscle pain? My husband has lost almost 20% of his body weight (not over weight to begin with). He's now very thin with obvious muscle wasting, especially in his legs. He has had leg pain (thigh and calf areas) since end of June and just can't get it resolved. Walking and trying to himself up from crouched position on floor is very difficult. He was very active & healthy when diagnosed by family physician with Type 2 in 6 months ago (A1C of 12.5 and BG of 285) and placed on oral metformin 500 twice a day. However, when we visited the endrocrinologist, he immediately started insulin injections 3 times each day prior to meals, increased metformin to 1,000 twice a day and eventually added Januvia and Amaryl to the mix. The endocrinologist wanted to see if he could be treated go without the injections - so he discontinued injections and added Actos. His sugars were very sporadic -- lows in the 50's and 60's, then after a dinner popping up to 190. Insulin injections may be back in the mix as the endo is now saying this could be Type I diabetes. (The endo doesn't feel leg pain is neuropathy -- saying it is probably too soon for that to happen.)

[warrenav]

I think cramps are a pretty common symptom from diabetes... I know I relatively often get them in the front of my lower legs. My relatively mild neuropathy, on the other hand, is mostly on the inner edges of my big toes. I wouldn't expect it to show in a big muscle mass but not at the extremities.

I've found that if I can keep my bg regularly < ~160, the muscle cramps will be less, leading to the thought that the kidney clearing of the excess sugar is also clearing needed nutrients. At about the same time that I got better control this last spring (mostly from lower carbs & exercise), I also started regularly taking a multivitamin. Not sure whether that might also relate to fewer cramping episodes.

6 months is pretty fast to be "wasting", even with treatment. That's usually more of a symptom of uncontrolled bgs before DX. I had dropped 20 lbs (from an already slim build) before I was diagnosed, but gained some even using metformin after getting better control (11 years ago)

Since there's some question whether your husband really is Type 2, definitely get the c-peptide and antibody tests that can help identify possible partial insulin deficiencies in type 1.5's. I was thought to be a (very) atypical Type 2, due to non-dependence on insulin therapy for >10 years, before finding out that I did have positive antibody responses.

Warren.

[e||ement]

hi rachael
i don't mean to sound harsh...but i think you are making your insulin use an excuse to NOT lose the weight you desire to lose...and that you are aware of that on some level.

you already know what you have to do, and say so...you have to change your eating habits, which, in turn, will change (decrease) your insulin use. your insulin use is a product of your eating habits...unless of course you are "feeding" your insulin, and that's an entirely different issue.

but, you being a pumper, i would assume you are using I:C ratios, etc.

perhaps what you need to do to get things rolling is take a pump holiday...and go back to MDI so it's not as easy to bolus for a mouthful of this or that.

i also don't understand your desire to get off insulin. i know you explained it...but i'll tell you my thoughts on this (being overweight myself...)

i would rather be fat and alive, than dead. :D

i hope that didn't come off too harsh!

[tealas]

It is a hope/dream/wish of mine that someday I will magically become super healthy and become non-insulin dependent. In my warped mind, I think that if I loose weight, eat zero carbs, exercise daily, etc...that I will not need to take insulin.
Have any of you gone off of insulin and still managed blood sugars? Am I in denial by thinking this is possible? I currently take about 35 units a day (pumper) on a lowish carb diet.

I welcome any advice you may have (I can take it...I think). Thanks!

Rachel,

I have been able to really cut back on my insulin usage with the following dietary changes:

Eating about 75 percentage raw foods, avoiding (or properly soak/sprout) "anti-nutrient" carb foods (i.e. grains, potatoes, legumes), eat a high percentage of leafy greens (preferably raw as in salad and green smoothies) and to consider the acid/alkaline balance of my diet.

Interestingly, these dietary changes have also helped me lose about 20lbs I put on since having my child 4 years ago. I think the "type" of carbs we eat can have a impact on how much weight we gain (for instance compare typical grain carbs to Resistant starch - Wikipedia, the free encyclopedia (http://en.wikipedia.org/wiki/Resistant_starch)). I'm not just talking about glycemic index here - I'm speaking more about the Paleolithic diet concepts and the "anti-nutrients" in grains, beans, legumes etc. I do also think that having the external insulin may encourage the body to store more fat, at least that was my experience.

Like others have commented, it probably is not helpful to look at it as "magic" - but I do think it can be possible to support the body towards a potential extended honeymoon through some of these dietary changes. There is another Type 1.5 on the board who has been able to do this.

These diet changes are a matter of personal choice. Many folks don't want that level of change, other's are thrilled to see the difference it makes in their health, other's may not feel well or have contraindications to that type of diet. But it is nice to know they may be an option.

You can email me if you want more info.